Saturday, June 28, 2008

Shots!

Well, the shots went really well. I actually didn't cry and I think it's because Blair didn't really cry that much. Baylee stood there and watched everything. Hopefully that will prepare her for the next time she gets shots! They said she looked really good and were impressed to hear that she was off the oxygen. Our appointment was with the Nurse Practitioner. She is really good and she is also a dietician. She told me if I ever needed to supplement her milk we could use Enfacare instead of Nutramigin. Enfacare is for preemie babies and it's usually easier on their stomach. And, it's 13.00/can instead of 28.00/can like the Nutramigin is.

We attended the Red, White and Baby Blue event last night in Fayetteville. I did really well speaking at it. I don't remember exactly what all I said, but Britt said I did good! I was SO nervous. I just don't speak well in front of crowds. It did help because there were a lot of people there that we are friends with so that made it easier! I bid on one thing in the Silent auction. It was a basket full of girly goodies for little tootie britches. It had 2 onsies... one says DIVA in leopard and the other has a guitar on it. Then there was a 2-T shirt in there for later on. It also had 4 headbands that are ADORABLE. I will have to get a picture out here of all of it! SO CUTE!

Katy, I'm trying to get some pics of Blair's big smile. Everytime I go to take the picture she quits. :)

Miss Thystle... to answer your question. When all of this heals and goes down she will not have a normal looking belly and belly button. Her Omphalocele is her belly button right now. The organs were actually in a sac at the base of her umbilical cord. More than likely when she is a year or two old she will have a surgery to "smooth out" her belly and create a belly button. It will be more of a cosmetic surgery than anything. The Pediatric Surgeon did say that they could put some sort of fascia (like muscle) over her intestines since they won't be able to stretch her muscle over all of that. He said a lot of times they use Gortex and that works really well. I hope that answered your question.... it's kind of confusing!

I'm getting ready to tackle my garage! :) I'm going to do some rearranging so I can park my Yukon XL in there!

2 comments:

I don't know how I did it but I got a picture of Merrick's smile--not easy since it is still rare sight! I was wondering how the belly button thing worked. How long does it take for the skin to grow completely over? Does it seem to bother her at all?

Background

Praying for Ryan

Praying for Karsie

My Peepers!

Omphalocele and PPH/RVH

This page is for Baylee and Blair. Blair was born with a Giant Omphalocele on April 7th, 2008. She spent 7 weeks in the NICU at AR Children's. Amazed by the Dr's she came home at the end of May only on a little bit of O2 and no other medications. She was also diagnosed with a 3mm VSD of her heart. That has since CLOSED COMPLETELY and will not require surgery. Recently we found out that she was born with her heart on the right side of her chest. She had surgery on Aug. 20th without expanders. The Dr's were able to do a closure surgery with a bit of alloderm pulling the muscles together. We will be in St. Louis for a few weeks while she recovers.

Baylee is an energetic 4 year old. She loves swimming, her babydolls, playing outside and most of all her little Sissy! She is our little princess and we have been amazed at how well she has reacted to her little Sissy. She is WONDERFUL to her little sissy and loves her so much!

She was diagnosed on April 13th with a Right Ventricular Hypertrophy due to Primary Pulmonary Hypertension. In July we traveled to Boston to see a Hypertension Specialist. I LOVE this Dr! She is wonderful and answered all of my questions. She will have another Heart Cath on Dec. 1st to check the pressures in her heart again. She is now sleeping with a bit of oxygen just as a precautionary.

I hope that everyone enjoy's reading about our lives and if you learn something in the process that's even better!